Taking charge of her diet and exercise helps this Michigan woman stay in control of her exocrine pancreatic insufficiency. Get her tips on living well with EPI.

Diagnosed
with both EPI and cystic fibrosis (CF) as a toddler, Schaller has lived with
both conditions for most of her life. But that hasn’t stopped her from running
nine half-marathons and setting a goal to run one in every state.

CF
is a hereditary condition that affects the lungs and digestive system, causing
thick mucus that can clog the lungs and the pancreas. Because CF affects these mucus
secretions in the pancreas, most people with CF also develop EPI, a condition
that blocks the production of enzymes needed to digest fat, protein, and
carbohydrates in the stomach.

Schaller
credits exercise, along with a healthy diet and taking her medications as
directed, as the key to success in staying healthy with these two chronic
conditions.

Managing EPI With Digestive
Enzymes

“I’ve
taken pancreatic enzymes my whole life and usually take about 30 pills a day, five
to six with each meal,” says Schaller, founder and CEO of the Rock CF Foundation in Detroit, a
non-profit organization dedicated to improving life for people with CF.

Schaller,
who often speaks to children with EPI and CF through her work at the foundation,
says that kids often struggle with taking so many pills at school. “They may
not want to take pills in front of people, but I tell them if you don’t take
your pills, you’re going to have repercussions, you’re going to have stomach
issues, and you’ll be going to the bathroom,” Schaller says. “That’s more
embarrassing.”

Schaller
explains that getting into a routine of taking digestive enzymes at mealtime
and having them handy at all times can help. “I have a bottle of digestive enzymes at
my friend’s house and my parents’ house, and I never want to go without them,” she
says. “It’s just a natural thing you have to get used to when you develop EPI at
a young age.”

Schaller
has also found that when she takes her digestive enzymes makes a difference. “I usually take them
with a meal and have even played with the timing. Now I take them with my first
few bites and have had no digestive issues,” she says.

Steven
D. Freedman, MD, PhD, a gastroenterologist, a professor of medicine at Harvard
Medical School, and the director of the Pancreas Center at Beth Israel
Deaconess Medical Center in Boston, agrees with this approach. “The goal is that digestive
enzyme pills have to mix with food and replicate what enzymes normally do,” he says.

But, he cautions, you must take the pills with food, not before.
“If you take them 30 minutes before eating, which is a common mistake, they
won’t do anything for you,” Freedman says.

A Better Diet
for EPI

After years on the high-calorie, high-protein, and
high-fat diet often recommended for people with CF, Schaller changed to a more
whole food-based, vegetarian diet.

“When I was on a high-calorie, high-fat diet a decade
ago, I had the most issues with digestion and my pancreas,” Schaller says. “Why
eat something that’s going to be hard to digest?”

Her diet is still high in calories, as recommended for
people with lung disease, but it’s centered on plant-based sources of fat and
protein like avocado, almond butter, coconut oil, and lentils. When she's training
for a marathon, she adds a vegan protein shake for extra energy.

Developing a diet for EPI that minimizes symptoms such as
cramping and diarrhea and maximizes nutrition depends largely on the underlying
condition that caused EPI, such as CF, diabetes, or pancreatic cancer, Dr. Freedman
says. Consulting with your doctor or a dietitian who works with people with EPI
can help you determine how to best meet your individual nutritional needs.

Schaller sees her CF doctor every two months to have her lung
and pancreas functions evaluated. She also sees a dietitian who monitors her
digestive enzyme dosage, weight, and body mass index. A yearly checkup with her
EPI doctor also helps keep her EPI under control.

Freedman says most people with EPI should see a doctor at least
once or twice a year. Seeing your doctor is also recommended if symptoms of EPI
worsen suddenly — if, for example, you develop increased diarrhea,
which could indicate that you need a different dosage of digestive enzymes or
that you’re experiencing another health issue that requires treatment.

By eating healthy, taking
medications, and staying active, people with EPI can live life to the fullest. “I’m
still researching, living, learning, and sharing what I know as I gain
knowledge,” Schaller says. “When I was living with CF and EPI before, CF took
over. Now I’m thriving.”

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